Consent to research

consent to research
designed by:
john wilbanks
sponsored by:
Sage Bionetworks
Kauffman Foundation
Lybba
pro bono counsel provided by:
danvorhaus

traditional
study
institution
“normal” home of research study
- university
- medical center

novel
institutions
emerging home of research study
- may invest at university
- may invest in novel studies (including mobile, company, ???)
traditional
study
institution
“normal” home of research study
- university
- medical center

novel
institutions
forming nodes, but not networks
unlikely to achieve integration
traditional
study
institution

novel
institutions
novel
institutions
traditional
study
institution
novel
institutions
novel
institutions
traditional
study
institution
traditional
study
institution
novel
institutions
traditional
study
institution
traditional
study
institution
traditional
study
institution
traditional
study
institution

privacy
aggregator
privacy intermediaries to facilitate private access
empower granular access to private information
focused on HIPAA sensitive data
privacy
marketplace

what‘s missing?
public access to information needed to build models of disease
the role of research in the system - of individuals who want their data used to generate new knowledge

what do we propose to build?
standards that allow for open and extensible communication across all four classes of entities.
the creation of “public genomic records” that are individual, but not identified
consent systems and user interfaces that allow those public genomic records to move from place to place

the creation of “public genomic records” that are individual, but not identified
Sage Bionetworks

the creation of “public genomic records” that are individual, but not identified.
Consent to Research

“approve once, research many times”

sage bionetworks “public genomic records”
“static” genomic
data
full genome sequence
genome variation (i.e. 23andme)

“dynamic” genomic
data
DNA expression
RNA expression
methylation
“the new new machine”

“observational”
data
phenotypic
disease response
“ambient” data (smartphones etc)

data
data
“observational”
data

requires “informed consent” to share.
data
data
“observational”
data

old school consent

new school consent

new school consent
(has a real legal tool underneath)

coming in 2012.

want to learn more?
follow @wilbanks
follow @sagebio
http://del-fi.org/consent
http://sagebase.org/commons

http://del-fi.org	261
http://d.hatena.ne.jp	103
http://www.science3point0.com	47
http://keitabando.hatenablog.com	8
http://www.tumblr.com	7

Consent to research

by john wilbanks

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